Jean,Good for you and your husband for trying different things and finding a medical team who could provide some quality of life through a good treatment regimen!Robin

Wed Apr 25, 2012 12:28 pm

KDehlbom

Joined: Sun Mar 11, 2012 7:43 pmPosts: 19

Re: New here- 51 yr old husband just diagnosed

Thanks Jean, It's very frustrating, indeed, to have such drastic changes in cognition from one moment to the next. At first I was afraid to plan anything for fear that Brent wouldn't be able to handle it, but I have decided it's better to go ahead and do all that we can while he can still participate at some level. The hardest part is the waiting for doctors' appointments and medications. We go to the neuropsych today for a one hour eval at which point a 2 day battery of tests will be scheduled. My husband is desperate for some meds to help with the confusion. I have a feeling we will be waiting a while.

You say you've brought in Hospice- I take it Ted is in the final stages? How are your girls handling this? Our son is the same age as your 18 year old daughter was at the time of your husband's diagnosis. He seems to be dealing with it fairly well. We talk to him about what's going on, though I don't think he knows the actual prognosis. It breaks my heart to see his reaction to his dad's episodes. They are very close. I am grateful that they get to spend a lot of time together, though and I emphasize that whenever our son gets sad about his dad's condition.

Kim

_________________Kim-wife of Brent, 51 yrs old, newly diagnosed

Mon Apr 30, 2012 11:27 am

jeanted

Joined: Tue Apr 24, 2012 5:00 pmPosts: 78Location: Fayetteville, NC

Re: New here- 51 yr old husband just diagnosed

Yes, when Mayo saw us last September, they had me sign the brain donation form and recommended starting hospice. They noted the steep decline from the prior year's visit (seems that's how it goes for him). Ted had lost over 20 pounds in about 4-6 months even though he'd been eating quite well and had (still has for now) a good appetite. But it was the increasing dependency on full care from me, more sleep deprivation from him waking up at odd times, and the inceasing dementia/paranoia/delusions that took the biggest toll. So, even after getting hospice at home since October, it still wasn't enough. Ted is now in a nursing home. I resisted for quite awhile, but the damage emotionally and physically was too great in trying to maintain a safe home for Ted and also remain available to our girls. The youngest has taken it the hardest. But, I believe it's because she's been home the most to see the worst. The oldest has been away at school and the middle one had moved in with her boyfriend. One thing each of them says is that the youngest doesn't have as many good memories of the healthy, "good" Dad. She is so sad because she mostly remembers these tougher times. Each is their own person and is handling things in their own way.

Surprisingly, Ted had a wonderful visit just this past Saturday during our middle's 20th birthday party. He was "on" and did quite well--except for getting himself stuck at the top of the stairs when he got away from me without knowing. I luckily had just realized he'd gotten up from his chair (I'd been in the kitchen) and found him there. He apologized and we slowly got him back down safely. That's the danger that you always have to be aware of (and when are you supposed to sleep if they're home and doing that sort of thing?). I should have put the baby gate up (but he has been known to try to scale that also).

He also has imagined that he's walked out of the nursing home. When I was driving with him somewhere after picking him up, he commented how he'd walked the same road that previous night during the rain (this did NOT happen--he's in a secure ward and cannot get out without a nurse logging us out and putting in a code to unlock the ward doors). He agreed that it was dangerous for him to have done so, but also commented that he'd woken up surprisingly dry. It's so sad to see how parts of his stories can make sense and others are so randomly outrageous. Today he told me "you're baby sister has been flying around lately" - she hasn't had a chance to see him since she & I went together about 3 weeks ago.

The hospice folks are still with us in the nursing home and are a double blessing. They help by getting him cleaned up if I haven't been able to do so, brushing his teeth & bathing him, changing his clothes & making him more comfortable 5 days a week. Yes, this is the same as what I had at home, but I'm not the "everything" the other 22 hours of each day now. That's what was taking the most out of me--the capriciousness of the level of his mental capabilities and his command over his body at different times. I would wake up sobbing because he would accuse me of sleeping with somebody when I'd been dead asleep next to him all night.

I can't say a time limit, but treasure the moments we have. I have come to terms with having to place him, and see that my health is getting better. I'm also able to have good visits with him AND have started to heal some of the hurt and pain myself and our daughters are going through. No solution is perfect. The youngest has been to the facility once and does not wish to go again, on the other hand, the middle child has gone on her own and has visited several times. I take what I can get and treasure that. The youngest gave him a hug and saw him on a "good" day. The middle one said she'd had a great birthday and we took him back to the facility together. There, she and he had their special kiss and thumbshake before we left. The big smile they shared was worth everything.

I see him getting weaker. I hate when we visit and the faraway look is in his eyes--I know then he's especially seeing those other things. I hate this disease and what it's taken, but hope in the future we can help somebody else to not have to go through this.

Mon Apr 30, 2012 3:46 pm

KDehlbom

Joined: Sun Mar 11, 2012 7:43 pmPosts: 19

Re: New here- 51 yr old husband just diagnosed

Jean, thanks so much for your reply. It really helps to know I am not alone in this.

_________________Kim-wife of Brent, 51 yrs old, newly diagnosed

Tue May 01, 2012 11:14 am

CCBell

Joined: Wed Apr 11, 2012 9:32 pmPosts: 61

Re: New here- 51 yr old husband just diagnosed

Kim: I too am rather new to this "club", the one none of us wanted to join. I am learning something new each day from other caregivers, and getting support from people who really know what you are going through. My husband wasn't quite as young -- he was diagnosed with Parkinsons when he was 63, just before he retired as a University Administrator. The Parkinsons progressed very slowly, presenting just as slow movements, no arm swing, soft voice, small handwriting, shorter steps, hardly any tremor. This went on for 11 years, til he was 74---then "strange" things kept happening, his visual-spatial issues became exceedingly worse, he began to forget how to balance the check book, or make coffee. 2 years ago the "strange" people began to appear sitting in our house, we all of a sudden had several houses that were exactly like ours, and there were several "Carol's" that looked just like me. I found the list of the LBD phases---he progressed almost entirely through the first 4 phases in 2 years. He still can take daily walks, but there are no more glimpses of normalcy, he shuffles more, can't read any longer, sleeps about 16 hours out of 24. He takes Sinemet & Stalevo for his PD; and Namenda for cognition (I have never seen any benefit from this); and Seroquel in the evening to help get restful sleep and decrease his agitation. Norris is still at home and I can (so far) run short errands leaving him, but I have a caretaker once a week--he calls her his baby sitter--when I go play golf. The journey is so very different for every patient but the destination remains the same. I think the best advice would be to remember it is not your loved one acting out it is the disease, and get all your legal, wills, power of attorneys in order to protect you both. Take care, there is always lots to learn. Carol

Yes, getting the paperwork in order is so important. In February 2009, Ted and I did our powers of attorney, living wills and healthcare powers of attorney (don't forget yourself in all of this). In March of 2009, Ted started seeing his dead father, other things. In the summer of that year was when he tried to pull the car over because of the people with guns in the cars around us.

This week, Ted fell at the nursing facility because his blood pressure had dropped and he passed out. I brought all of those powers of atty with me to the hospital. I ALSO brought two information booklets about Lewy Body. I used those in my discussions with the succession of physicians we went through (ER physician, hospitalists, cardiologists, etc). It's a continuous battle. One was the LBD Assn's "An Introduction to Lewy Body Dementia". It has the Emergency Treatment of Psychosis in LBD card in the back of it. The other was the Caregiver's pamphlet (sorry, I left that at the nursing home & don't have the exact name). Both are from LBD.org and were given to me by Mayo.

The other thing that helped was that I'd given the nursing home a copy of Ted's last progress notes from Mayo clinic. I guess those were pretty good because they'd sent copies with him (I had given them those upon his admission there). Besides showing that he's in the Alzheimer's study there, they also helped show what Ted's status was overall.

Ted's condition remained stable during his stay and he's now back at the nursing home.

I have realized that I will be talking (again) to his doctor at the SNF about some of the things nursing/other staff needs to remember about DLB. I think I'll have them make a copy of the patient pamphlet to place also in his chart. I still get nursing staff (hospital and nursing home) asking what LB is.

I DID remember to request a personal copy of all of the notes & procedures done for Ted during his hospital stay so I will have those at the house.

Two notes to self for next time tho:

1. Pack yourself a phone charger that can plug into the wall so you don't have to run to your car to recharge your cell phone. We were stuck in the ER itself for 13 hours...ugh.

2. Get current meds schedule from SNF so I know exactly what he's on & when (there'd been some changes and I hadn't had a chance to get a proper listing) and I'm better able to discuss with ER docs/others.

I won't talk about how the SNF's phone system went down for 6 hours and Ted almost didn't get his Sinemet due to a documentation error in the paperwork they'd sent.

Sun May 06, 2012 7:49 am

CCBell

Joined: Wed Apr 11, 2012 9:32 pmPosts: 61

Re: New here- 51 yr old husband just diagnosed

Jean: We seem to be getting close to the time that Norris will need more care, and where I can't physically do everything. As I said he is on Namenda, but we just titrated up to the amount the Dr. prescribed....and I can't see any change in cognition, in fact it is getting much worse...so either the Namenda doesn't work for him, or the disease has advanced very quickly once again! It is always hard to tell. He hasn't been able to take his daily walks for a week and his shuffle steps are getting shorter and shorter. I am interested about the Hospice, do they need to be bed ridden before Hospice can assist? Carol

No, doesn't necessarily have to be bedridden. Just discuss with your doctor(s?). We had the Mayo team and then the VA docs, who had been all following Ted for several years and we are lucky that they shared knowledge & documentation and know his progression. Hard to say we're lucky with anything with this disease.

Sun May 06, 2012 11:01 am

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: New here- 51 yr old husband just diagnosed

Jean, you are not only "lucky" -- you are very diligent, well-organized, a quick learner, and a loving caregiver. Ted is very lucky indeed (no quote marks necessary) to have you at his side.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sun May 06, 2012 5:11 pm

jeanted

Joined: Tue Apr 24, 2012 5:00 pmPosts: 78Location: Fayetteville, NC

Re: New here- 51 yr old husband just diagnosed

Thanks everyone. I'm crying a little because I am sometimes still not sure I'm making the right decisions, but I'll keep trying. I replied on the constant delusions thread about some more things I've learned. I have to say on the positive side, the learning curve about having the copy of the medications with me definitely helped me this week. Was so glad I had it in hand.

Sat May 26, 2012 8:53 am

cassy

Joined: Fri Dec 21, 2012 9:17 pmPosts: 3

Re: New here- 51 yr old husband just diagnosed

Hello, my name is Ken and I'm having some problems with all of the forms. Not to sure if this is the place to let everyone no last month I was told I have LBD. I'm 61 and have not been able to work for 2 years. I have never heard of this illness before the nuro clinic told me and my wife. I'm very upset, my wife is not taking this very well, she really does not want much to do with it all right now. I'm still unsure how this will progress, I'm having lots of problems with memory, balance and seeing little green guys. They have started me on Aricept 5 mgs for 1 month then 10 mgs after that. I do not sleep at night and very tired all day. My body is stiff and very very sore. I have not seen the nuro guy since last month and have not told him about all this. Is there something they can do to keep me awake in the day and help the pain. Hopefully I will be able to find any replys when I sign back in. Thank you

Fri Dec 21, 2012 10:25 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: New here- 51 yr old husband just diagnosed

Ben, Welcome to the LBDA forums, I am sorry for your need. These forums are made up of mostly caregivers so perhaps your wife would want to join and you can both learn ways to perhaps help with different issues you may face, We have had a few people come here that has LBD but sadly they find it hard to keep up, there is an area just for people with LBD that is completly private but I admit it isn't used often !

Good Luck and I hope the Aricept gives you some help !

_________________Irene Selak

Fri Dec 21, 2012 11:17 pm

jeanted

Joined: Tue Apr 24, 2012 5:00 pmPosts: 78Location: Fayetteville, NC

Re: New here- 51 yr old husband just diagnosed

Hi Ben,

It sounds like you may want to go ahead and get another appt with your neuro doc and possibly ask about some of this with your primary care doc (and have them coordinate to make sure any meds are "ok'd" by neuro to avoid interactions). Maybe a couple of suggestions that might help? Ted would talk about how his feet would feel like wooden blocks, his body ached, and things just hurt all over. The stiffness was the worst. I would put him in the shower sometimes just for the relief of the soothing warm water. We tried massages (I gave him some massages from the local gym as a Christmas gift one year). Just rubbing his feet and back would also help. As for the daytime sleepiness, I would make Ted go for walks, or we'd get in the car and go to lunch or dinner just to change up routine. I'd also try to engage Ted in word games or the Wii bowling, take him to movies, or just outings to "help" me do errands. He'd sit in the car mostly, but it helped me and him both. This would help also to take his mind off of his pain. Unfortunately, he just couldn't help falling asleep a lot of the time because LB just does that to you. Ted hated having to take meds but this disease gives you no choice. He would take some over-the-counter pain meds, which helped--but also, was through coordination with his doctors. Hugs to you and your family.

Sat Dec 22, 2012 8:43 am

cassy

Joined: Fri Dec 21, 2012 9:17 pmPosts: 3

Re: New here- 51 yr old husband just diagnosed

Thank you very much.

Sat Dec 22, 2012 12:46 pm

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: New here- 51 yr old husband just diagnosed

hi ken.. sorry for your need to be here... my hubby was young when we first started noticing problems but wasnt diagnosed for years later.. i hope you an get a good team of docs that you feel comfortable with and they can get you on some meds that will help with the pain..

maybe if your wife could come on here with you it might help .. sometimes the fear of the unknown is the scariest...

you are both in our thoughts...

learning and knowing the right questions to ask.. have been so helpful for me... this place has been my bible, on lbd

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